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Thursday, April 20, 2017

Watching My Children Bloom



We’ve had some interesting changes around here lately. I took Ben and Jonah to see a “Lyme Literate Doctor” a few weeks ago. He agreed with me that there is much more going on with all four kiddos than what meet the eye. We spent several hours talking, discussing, and brainstorming about what is going on with the kids and how to help them. I LOVE this doctor. Every single thing that came out of his mouth resonated with me. He talked about all kinds of things I’ve learned about. I kept thinking, “Thank goodness I’ve done as much research as I have, because this is completely overwhelming to me even knowing all that I do! I can’t imagine having this be my first experience with this kind of doctor!” I guess it is a blessing that I have been on this path for so long. It felt like a miracle to finally find a doctor who wants to walk with me on this path!

This doctor, I’m tellin’ ya. So brilliant. He said the boys have yeast overgrowth- a common problem when you have an immune system in overdrive and things going haywire in your body. You have good bacteria and bad bacteria in your gut, and your immune system functions primarily in your gut. When you have too much bad bacteria, this can lead to too much yeast in your body. Too much yeast can cause a zillion problems. Things from brain fog to Irritable Bowel Syndrome to trouble with your bladder. Hello, have you met my four children?? They are the poster kids for yeast overgrowth!! The doctor had me look at the boys’ tongues—they had a white coating on their tongues from the yeast growing out of their intestines up their esophagus’ and into their mouths. Ew! So the first thing the doctor did was to begin to address this yeast issue.

The doctor said the kids definitely have symptoms of tick-borne illnesses. This was passed to them while I was pregnant with them. My tick-borne illnesses most likely caused my babies to be born prematurely. Poor little things. That is something that positively eats me up inside. I have to redirect my thoughts each time this pops in my head, and purposely think about all the things we’re doing to help the kids regain health and happiness. That’s all we can do now. The doctor said he has about 15 families in his practice who are like us- they all have Lyme and co-infections. Pretty interesting. The doctor has found that many children who are diagnosed with things like Autism, tic disorders like Tourette Syndrome, ADHD, PANDAS, and other neurological disorders often have Lyme and yeast overgrowth as well. When families address the underlying problems of yeast and tick-borne illnesses, most often other symptoms improve as well. Fascinating.

When the doctor examined the boys, he asked me why they had red marks on their arms and lower backs. I said I always thought they were stretch marks from being on a medication for that caused them to gain a lot of weight. The doctor told us those are not stretch marks. They are a rash from Bartonella- another tick-borne illness. I. Was. Floored. I could not BELIEVE it. I Googled this rash when we got home, and sure enough, it could be pictures of the boys on those sites about Bartonella. I was shocked. So crazy. To see physical proof of this illness on your child's skin...insane.

The doctor started the kids on a protocol to slowly address their yeast and tick-borne illnesses. The kids have to be gluten free, soy free and dairy free (this one is proving to be very tough, but we just limit what we can and do our best). They have to limit their carbohydrate intake because carbs feed yeast. The treatment is extremely slow and gradual, because this healing process takes time. You can’t just pop some pills for two weeks and feel completely better. It’s going to be a marathon, not a sprint. I have a calendar for each child with their treatment plan. Each child may respond differently to the treatment, so I have to take daily notes or I’ll forget who is doing what. It’s a little intense and complicated, but I’ve been organizing meds for all of us for so many years, it just takes a little adjustment to add in this new protocol. The whole family is also on a bunch of supplements that the doctor recommended based on testing he did with the kids.

Ben and Jonah did further testing- 24 tubes of blood, saliva and urine tests. We will have final results in a couple months. The boys were NOT fans of this testing. For one thing, they can’t spit. I don’t know what it is, maybe it’s the fact that they’re tongue-tied, so they can’t get their tongue to cooperate with what it needs to do to spit. They were supposed to spit in a tube four times during one day. The saliva had to reach a certain line on the tube, and the tubes were little. We’ve done other spit tests and the tubes were huge, but these were little. Still, you wouldn’t beLIEVE the drama we went through that day about those darn spit tubes. OMG. You’d think I was forcing them to cough up and donate a kidney. The tears, the anger, the fussing…my lord. Ultimately, they couldn’t fill the tubes with enough saliva to reach the lines, so I’m not sure if we’ll be able to get accurate results from that test or not. I wrote a little sticky note to the lab, explaining that due to their special needs, the boys did the best they could with the spitting and that was all we could provide. Drama, people, drama.

I was so proud of the boys though, because they have been such troopers through all of this. The doctor alone is almost 2 hours away. So to miss school, drive there, spend about 5 hours with the doctor and nurses, drive the 2 hours home, do all these tests, take all these pills…it’s a lot for anyone, let alone a kid. I keep explaining everything to them so they understand why we’re doing what we’re doing. And they’re so on board with it all! It makes sense to them, they agree with the treatment plan, and best best best of all, they’re already seeing results. It’s going to blow your mind, but it’s really happening.

I’m not sure if you understand what a HUGE, GINORMOUS deal this is for me. I have been searching for help and answers for 14 years for my boys. Every single path I’ve gone down with them has led to something valuable, but not the missing piece of the puzzle. More times than I can count, I have been literally laughed at by doctors. They literally chuckle in my face and tell me my hypothesis is nuts. How is that a healing, compassionate way to treat a child’s mother? I've realized over and over again that how a person reacts to me is more about them and less about me. People ask me why those doctors aren’t in my life anymore, and that’s why. If you can’t at least respect me enough to explore my questions with me, see ya. I have no time, patience or energy for you anymore. I’m not willing to let my children suffer any longer because society thinks I’m nuts because I ask tough questions and think outside the box. Honestly, I’ve never fit into that box, so I’ve learned to embrace that aspect of myself. If others can’t, that’s ok. But then I can’t spend any more energy on those people.

So here’s the deal. We’ve gone totally gluten free. The kids are on board. Alex is doing it too. We’re being triumphant over gluten!! Woohoo! I told the Lyme doctor that I’ve had the family go gluten free twice before, and we have never seen a difference in the kids’ behavior or symptoms. After hearing the doctor explain why, this is how I told Alex about it: a body is like a bicycle wheel. It has spokes. Each spoke represents an aspect of your health. So one spoke is how well you sleep. One spoke is your diet. One is your immune system, etc. All these spokes contribute to the overall well-being of the wheel. Say the spokes on the wheel are all bent and broken. The wheel isn’t going to work efficiently. If you have the genes for gluten sensitivity, this is one spoke that's bent out of shape. If you have Lyme, that’s another spoke that's busted. If you don’t sleep well, that spoke is bent too. Your “wheel” (your body) is going to be all wobbly and won’t function at an optimal level. Say you stop eating gluten, but that’s the only spoke you fix on your dysfunctional wheel. The whole wheel isn’t going to work any better, because it still struggles with not sleeping well, having inattention and hyperactivity, not having enough of the right neurotransmitters to handle life’s stressors efficiently, etc. In the past, we tried to fix one aspect of the big broken wheel by going gluten free, but there are so many other things wrong with the kids’ bodies that just fixing one issue didn’t make a noticeable difference. So now we’re fixing the WHOLE wheel at once. We’re taking a multi-step, multi-faceted approach to healing our bodies.

The only one who is grumpy about this diet change is Aidan. He’s in a bit of a snit about it. He and Ella are super picky about food, so it’s going to take some time before we find things that fit into our diet that they enjoy eating. But we’re committed to it. No if’s, and’s or but’s about it. Not even a “How about..” This is Aidan’s favorite bargaining tool: “Can we have a ‘how about’? How about I eat a huge gluten-filled bun with my hamburger?” Um, no sir. Now we have lettuce wraps with our burgers, because gluten free buns are usually terrible. Surprisingly, some things that I thought would be a big fight are pretty easy. On Mondays, we have a crazy after school schedule, and sometimes Ella and Aidan get to eat Portillo’s for dinner. Last week, I’d prepped them- no gluten! So we have to do lettuce wraps if you want a burger. It took a little convincing, but Aidan ended up loving his lettuce-wrapped burger. And Ella devoured her lettuce-wrapped hot dog. (Gross, if you ask me, but whatever.)

So here’s the best part. Especially for Jonah, there have been crazy improvements in his health. The second day after starting the treatment for yeast, Jonah started changing. He became calmer. He became happier. His brain seems clearer. His bladder issues have gotten better. Constipation took a while to improve, but it’s on the mend also. He is seriously like a different kid. TWICE in the past month, he has said these words to me: “I’m happy.” Ok, people, I haven’t heard my boy say that in probably nine years. Nine years. In the past month, he’s said it twice. This is insanely crazily huge for our family. Can you imagine? Suddenly coming out of a fog, feeling happy once in a while, feeling calmer in your own skin, feeling…just ok with life more often? After an eternity of struggle. It’s blowing my mind to witness this change.

Jonah even went through a self-induced makeover. For many months, he has let his hair grow long. He always looks adorable, but a person’s hair says a lot about what’s going on inside of them emotionally. Jonah’s poor hair looked a little sad. It was all heavy and covered his eyes and ears. Like he wanted to hide a bit. I always try to encourage the kids to be who they want to be, look the way they want to look. But I’ll be honest, Jonah’s hair bugged me.


A week after we started our treatment protocol, Jonah started talking about a haircut. He found a picture of a cut he liked, and I took him to get it done. I thought he’d change his mind, but I didn’t push. That boy walked out of the hair salon a new man. He has this haircut now that is so CUTE! It’s short and styled and off his face. He looks like a model. I know I’m completely biased, but seriously, model material here. Then he asked to buy some new clothes! Then he wanted a new, cool jacket! THEN, I know this will embarrass him but that’s my job as his Mama, he needed a new style of UNDERWEAR!!! Come on! Can you believe this??

For so long, he’s been shlumping through life. Unhappy, uncomfortable, overwhelmed, stressed out. We start treatment, change his diet, get him on supplements, and boom! He’s a new person, inside and out. Not once since we started treatment has he laid on the floor, screaming and crying for more than an hour because he didn’t know how to calm down. I know I cannot express to you the enormity of what this means to me, but let me tell you, this is life- changing stuff. And I have a front row seat to watch this incredible boy blossom. You cannot tell me this treatment didn’t have anything to do with his blooming. Even Jonah’s teachers have noticed changes in him! His math teachers told me yesterday she can’t believe the difference in him—he hardly ever visits the bathroom during class now, and when he does he isn’t gone nearly as long as he used to be. His choir teacher keeps commenting on Jonah’s haircut in class, which makes Jonah feel so special and proud. The teacher said last week, “So class, remember how when we started this year, you were all so shy and quiet? And then Jonah went and got a HAIRCUT and looks like a JUNIOR!” And, “Remember when Jonah first joined our choir this year? He just sat in the corner and kept to himself and was so quiet…and now listen to him!! He SINGS!! You should all be singing like JONAH!” Ben and Jonah are so supported at school. It’s an incredible shift for them.

Now, don’t get me wrong, we still have challenges. Many, many challenges. But who cares? When you add up the incredible positive changes that are happening for this boy, I don't care how many daily challenges we face as long as we’re getting some good in there too.

The other kids are still struggling a bit more than Jonah. Mood issues, anger, irritability…all still hanging around. But the Lyme doctor said there will be times when symptoms flare and get worse. This is expected. We just have to hang in there, find ways to get through the tough spots, and keep loving on those kiddos as best we can. I keep communicating with the kids and tuning in to them, asking them how they feel and trying to support them where I can. They need to be active participants in this healing process. It’s hard to get Aidan and Ella to take the supplement drops they need to take every day. It’s difficult to get Ella to do her two nose sprays every day that her ENT says she MUST do to try to avoid surgery on her ears. It was a challenge to get all four kids through a round of antibiotics for the strep and sinus and ear infections they just got over. It’s tough. We have ongoing, daily drama about all of these things. Along with all the normal drama about homework and showers and bedtimes…but if there is one single ounce of hope that inside those little bodies there is some healing going on, it’s all worth it. I’ll try to stay patient every day and muscle through the drama if I know that my children will be healthier and happier someday because of what we’re doing right now.

Just listen to your Mama Hearts. Never give up if you feel your questions haven’t been adequately answered. Never give in to people who laugh at you and say you’re crazy because you dare question the status quo. Boxes were made to be busted out of. Don’t let anyone try to stuff you back in the box that they feel most comfortable with you in. If you think you need to keep searching for answers, about anything- your own health, your children’s health, anything- just keep digging. You’ll find answers if you keep looking. And then you’ll get to wake up to a new day and watch your children bloom before your very eyes. And you’ll know every excruciating struggle you’ve been through has brought you to this point, and it was all worth it. Because your children are starting to bloom.

Thursday, April 6, 2017

The Voice of God (aka- The Day Aidan Got His IEP)


Once in a while, I know the voice of God. It’s not that I hear it. I just know it. Like it has been written on the seat of my soul, on the walls of my heart.

I know, that sounds insane. But before you judge, or criticize, or think I’m loony, just hear me out.

A couple weeks ago, I finally got our school to give my 5th grader an Individualized Education Plan (IEP). This is extremely significant in the life of our family. Our four kids all have special needs, but they are the kind of needs that are “invisible.” If people looked at a snapshot of our family, you would see four adorable, blond, smiling faces, all who look “normal.” But they all have significant challenges, and their appearances are deceiving.

My kiddos struggle. A lot. With so many things that come easily and naturally to other children their ages. My children have a host of diagnoses, including Tourette Syndrome, ADHD, Sensory Processing Disorder, mood disorders, anxiety, and learning disabilities. Even though the kids have these official diagnoses, it is often difficult for me to obtain services for them because they look “normal.” Year after year, our school has said the kids do not need additional services at school because they are functioning well enough, and that their problems must be “home” issues, and parenting issues.

Year after year, I’ve received emails and calls from my children’s teachers, asking for help with my kids. What have we tried at home that is successful? What ideas do I have to help the kids at school? What should the teacher do? I’ve done my best to help guide and educate the teachers about my kids. I’ve racked my brain, trying to come up with more ways to help my kids succeed, both at home and school. Life shouldn’t be this hard for people who are so little.

Despite my best efforts, my kids still struggled at school. Teachers would contact me, at their wits’ end, not knowing how to proceed with my kids. So I would request a meeting with the team at school. We would get to the meeting, and I would express my concerns about my children’s growing troubles. The team would tell me that my child was fine. My child was acting fine, learning fine, doing fine. Implying that I was somehow overreacting, somehow wrong. That my child’s troubles were only at home. That despite the teachers repeatedly contacting me about their concerns, my child was fine and did not need additional services at school.

This message that I was somehow to blame for my children’s disabilities was a tough pill to swallow. Since the day each of my four preemies was born, I have been determined to help them be as happy and healthy as possible. I have spent zillions of hours with the kids at every kind of therapy you can imagine, listening and learning from our amazing therapists. I have been to countless doctors, begging for answers, begging for help. I have had to convince my husband that treatments not covered by insurance are vital to our children’s well-being, and we must find a way to pay for them out of pocket. I have done therapy homework with the kids, day after day. I have had to make the impossible decision about whether to use medication to help my children. I have driven them all over tarnation, looking for answers, searching for help. As all of our friends pile their kids into minivans to go to soccer or basketball, I load my littles in the van to go to more therapies, more doctors.

Don’t get me wrong, we do find time for fun and relaxation. But having a family with special needs is darn hard work. You’re on call ALL. THE. TIME. There is never ever a millisecond where you can disengage from the fact that your kid might need you. Even when they are at school, or with grandparents, or the once-in-a-while-miraculous-babysitter, you never know when you’ll get the call that your kid needs you. That your kid can’t handle life at that moment, and all they need is you. And you drop everything, day or night, and run to them. Because that’s your sole purpose in life- to make sure your babies live well, are happy, are loved and healthy.

When your entire existence revolves around guiding your children who have special needs through life, to have people tell you that your kids’ problems are because of you…that’s soul-shattering. You know it’s not true, but the seed of doubt has been planted. When people tell you that your kids just need a spanking, they just need tougher discipline, you worry that maybe they’re right. Maybe if you had been tougher on them all along, the kids wouldn’t have so many struggles now. You know that’s not true, but you worry just the same. When people tell you you’re crazy for driving an hour to see a special eye doctor and spending a fortune on glasses to help with visual processing disorder, a tiny voice in your head wonders if they’re right. You wonder if all the money you’ve spent on alternative interventions was a waste. You know it’s not true, but you doubt yourself, just a little. When your school says your children's problems are because of their home life, you wonder what you could be doing differently. You wonder why all your exhaustive efforts to do any and everything to help your little darlings isn’t working. All the reward charts, and therapy homework, and therapy visits, and hours in the car driving to appointments, and special glasses, and medication, and massages, and supplements, and…what if everyone is right, and the only problem your child has is you?

What if it’s all your fault?

Since my 5th grade boy was in Kindergarten, teachers have been asking me for help with him. He’s such a sweet boy, he’s got such a huge heart, he makes friends every single place we go, he’s kind and compassionate and sensitive. But he wiggles, he doesn’t pay attention, he can’t get organized, he doesn’t understand math, on and on goes the list of my boy’s alleged shortcomings. For six years, I’ve tried to work with my son’s teachers to help them help him. Each year, I would ask for a meeting when the teacher said he/she was at her wit’s end and didn’t know what else to do for my boy. Each year, I would sit at a meeting with up to fifteen school staff, who would tell me that my son didn’t qualify for more services than his 504 Plan would allow, and that he was fine.

My 5th grade boy is my third child. My twins, who are now freshmen in high school, have similar diagnoses and issues in school as my 5th grader. I had gone through the same run-around with my twins as they went through elementary and middle school. It wasn’t until we spent our own money for a private evaluation, hired a behavior consultant fluent in the diagnoses of Tourette Syndrome and anxiety, consulted a lawyer, and hired an advocate that I was able to educate the school well enough on my children’s needs that they agreed my kids needed more support.
So with my 5th grader, this ain’t my first rodeo. Been here, done this. Twice before. Imagine how many times I’ve been given the message that I’m not a good enough parent. From other people in my life, but also from our school. Imagine the determination and courage it takes to fight that message when it comes at you over and over for so many years. Imagine how hard it is to hold on to your strength and know that you are doing everything under the sun to help your children. Imagine how hard it is to fight that little voice of doubt that the world has planted, saying it’s my fault my children struggle.

I went to my 5th grader’s IEP meeting a couple weeks ago. Once again, I sat around a table with 10 school team members. Once again, I felt outnumbered. Once again, I worried my son wouldn’t qualify for the help he so desperately needs at school. Once again, I worried I might dissolve in a puddle of tears in front of all these people.

The team went through my son’s evaluations. They talked about test scores, performance in the classroom, his deficits. The doctor we hired to do a private evaluation talked about her insight into my son. Finally, after an intense hour, the team said my son qualifies for an IEP. After this announcement, there was silence as everyone looked down at their notes and computers. I waved my fist in the air and joyfully announced, “Hurray!”

My response may have been a little silly, but this jubilant moment that I’ve been fighting so hard for, for six years, deserved some recognition. Finally, my boy will get the help he’s been needing. Finally, he will have his needs better met at school. I truly, maybe naively, believe that our school does the best it can for its students. I admire and respect every teacher my children have had, and I know they work hard every day to help my kids. It’s just difficult for the world to know what to do when your kiddos have “invisible” special needs. But just because the needs are invisible, doesn’t mean they’re nonexistent.

I left my son’s IEP meeting and drove around, frantically running errands before the bus delivered my darlings home from school. I pondered the meeting. I reran the test scores in my head. I thought about the comments teachers and the social worker had made. I thought about what the director of Special Ed had said about what label my son qualified under for his IEP. I silently whispered a blessing of thanks to each member of the team who is helping my boy. I was grateful to our advocate for her patient help with all of my children. I was grateful to the doctor who spoke to the team about my son’s disabilities. I was grateful to all of them.

That’s when it happened, when I knew the voice of God. You can call it whatever you like- intuition, the voice of my soul, it doesn’t matter. It was like someone wrote on the inside of my heart: “YOU did this. YOU did this. It is because of YOU that your little boy got help today. YOU did this.”

I am proud to say this had been one IEP meeting where I had held it together and had not become a sobbing, hysterical mess. But when that message bamboozled its way into my consciousness, I lost it. I burst into tears. I sat in my car and wept. I wept with gratitude for that message, I cried with the relief that comes with knowing- truly believing- you have made a difference in your child’s life. For one moment, I accepted the foreign feeling of being proud of something I have done for my kids.

I realized I am quick to notice other people’s contributions to my children’s lives, but I rarely truly believe that I am doing a good job at being their Mama. I am so thankful for each person who helps my children. I am in awe of our therapists and doctors and teachers. I think they do amazing work with our kids, and we wouldn’t be in the place we are if it weren’t for all those people. But I never take time to pat myself on the back and believe that my children are as happy and healthy as they are in large part to me. I try to find the good in others, to make sure they know how much I love and appreciate them, but I don’t do the same for myself. So to have the knowledge nestled in my soul that the reason my son got an IEP was because I kept pushing, year after year, never giving up no matter how many times I had to sit in a lonely, intimidating, overwhelming meeting, no matter how many times I had to be subtly blamed for my child’s problems, no matter how many people think I’m crazy…the message that this success was because of me was profound.

As parents of kids with special needs, we are often quick to thank the gifted people who help our children. It is much more difficult to realize that we need to take credit too. It’s very hard to sit in a quiet moment and say to yourself, “Great job! You are rocking this parenting thing!” and believe it. We need to remember our children wouldn’t have access to those gifted therapists and doctors if it weren’t for us. Our children wouldn’t know love and acceptance if it weren’t for us. Am I a perfect parent? Absolutely not. But am I doing the best I can, all the time, no matter what the day brings us? Absolutely. We were given special children, and we need to make sure we give ourselves time to acknowledge and appreciate the work we tirelessly, endlessly, lovingly do to help our children be happy and healthy.

Take a moment. Take credit. You’re rockin’ this parenting thing! It’s because of YOU that your child is doing so well today.

Thursday, February 23, 2017

Tomorrow Might Be Worse- Love Today!

Having a chronic illness, or two, is like Weight Watchers for my energy system: everything I do costs energy points, and I only have a set number of points to spend each day. Every single action that my body takes, from the moment I wake until the moment I sleep, takes a certain amount of energy points. When I get to the end of the points, that's all there is. There's nothing left. And no amount of rest will replenish the energy points. Unlike the real Weight Watchers, I can't cheat and just spend a little bit more energy. The tank is depleted and that's it. Sometimes the tank of energy is empty by noon, sometimes I have enough to get through until 8:30pm. It all depends on what type of activities I spend my energy on during the day.

Things I never used to think about now drain me. Going grocery shopping costs me a lot of energy points. Because my kids have special needs, we spend a lot of time in doctors' and therapists' offices, and sitting costs a lot of points. When I sit still, the chronic pain that I have throbs and flares. I hate sitting still. It's excruciating. Making a phone call costs points. Having lunch with a friend costs a lot! I love being with friends, they make my heart sing. So although I refuse to give that up, I have to ration my points for the day accordingly. I know that after meeting a friend, I won't have enough energy for anything else that day. Listening to music with lyrics costs a lot of me energy points, because chronic illness has made my brain a thick, dull muscle that has forgotten how to flex. When I listen to music with lyrics, my brain tries to understand what the song is saying, which takes a huge amount of focus. When I'm driving, I can't listen to music with lyrics or I won't be able to focus on driving. And while we're on the subject of driving, that activity probably costs me the most points. There is so much going on when you drive a car, so many things you have to think about and pay attention to all at times. AND you have to SIT to drive, which we've already established is very difficult for me. Driving is the most exhausting activity that I do. If I drive a lot in one day, it takes me several days to recover.

When you have a chronic illness, in the back of your head you're calculating energy points constantly. If I have to take a kiddo to therapy, and sit in the waiting room and wait, I shouldn't plan to go grocery shopping that day. If I have a meeting with the school, cancel all other plans the day before and the day after, because stress sucks out all my energy points. If I have to have any conversations with other humans at any point during the day, deduct points. Being social is exhausting. I love it, but it's exhausting.

Not only do I have to figure out the logistics of life with four kids and two dogs, but I also have to always make sure I'm maintaining a positive balance of energy points. If I mess up, or don't plan well, or something unexpected happens, I may not have enough energy to snuggle with my little girl and read her books before she falls asleep. Or I may not be able to go to my yoga class, because even the fun things cost points. I don't have an endless supply of energy anymore. Which is hard for healthy people to wrap their heads around, I get that. People who are "health-challenged" have to count their energy points all day, every day, in order to get everything done that they need to.

Having a chronic illness feels like treading water. You never get to float, you're always working hard to survive life's demands. Some days it's easier than others to tread water while the seas are glassy and warm, but you're still working at it. On tough days, there is seaweed wrapped tightly around your ankles, pulling you down as you do your best to catch your breath in between the waves that roll over your head.

Always working. Never floating. Nothing is ever easy, nothing ever gets taken for granted. Which, if you think about it, is a pretty cool gift that chronic illness gives me. Chronic illness makes me appreciate everything. Chronic illness is unpredictable, and I never know if tomorrow will be worse than today, so during my "today's" I do everything I can to be happy and healthy and enjoy life. I don't know if this is the best day I'll have all week, so if I have energy to see a friend today, I'm going to grab that opportunity! If I have energy to get groceries AND walk the dogs, I'm doing it! And while I do it, I'll be rejoicing that although I feel like I'm dragging my body through quicksand- even on this good day- I'm outside in the fresh air, using my legs and enjoying my puppies. If I have the energy to write, today I will! Because I don't know what I'll feel like tomorrow. Tomorrow might be worse than today.

This is why being a friend with a chronic illness is difficult: you want to be able to commit to something and follow through, you want your friends to be able to count on you. But sometimes you have spent too many energy points dealing with life's everyday stress, and you don't have the capacity to pull yourself together and muster the strength for one more conversation. Being a parent with a chronic illness is the worst. Sometimes I'm so fatigued I find myself snapping at my kids when there's no reason. No reason other than I spent all my energy points before they got home from school, so now parenting seems completely daunting and impossible.

Often when someone has chronic illness, they look fine. My mom told me over the weekend that although she knows I don't feel it, I look vibrant, healthy, put together. What a nice thing to say! And what a tricky, sneaky thing for chronic illness to do to someone. I have a friend who has a chronic illness also, and we agree that we should come up with a spot system. On days when we feel only medium-horrible, we would wear purple spots on our skin. On super bad days, the spots would be green, etc. That way, how we look would resemble how we actually feel. Then the world might be more understanding if I say, "You know, I just can't go out for lunch this week, because I spent all my energy points dealing with my kid's school about his IEP, and my spots are FUSCHIA today!"

People with chronic illness get it. If my friend with chronic illness knows I've been out of town for the weekend, she also understands we won't be meeting at the pancake restaurant this week. Instead, she texts (Notice, she doesn't call, because that's too exhausting for both of us!) to see how I am and if I am recuperating from the trip.

Each person has their own energy point system, and their own spot system. Unfortunately, these systems are invisible to the naked eye, so it is vital that we never, ever, ever judge other people. You never know what someone else is dealing with. Sometimes the energy points are all used up, and your friend with chronic illness will disappoint you. Sometimes your friend with chronic illness has puce-colored spots and just can't keep your plans. Sometimes your Mama with chronic illness had to take you to a very long, very far away, doctor's appointment for your special eyes, and so Mama is running on fumes and doesn't have the normal patience she usually has.

Just know that although this chronic illness demands a lot- a lot of care, attention, calculating, energy- I won't let it take over my life. I will save up my energy points to have pancakes with you. I will ration my energy to read you bedtime books and snuggle with you. I will wait for rainbow-colored-spot days to do laundry AND clean the bathrooms. Chronic illness demands a lot, but you learn to manage it the best you can. Sometimes it's unpredictable and surprising and difficult. But it's important to maintain an attitude of gratitude in order to find the small gifts even on the fuschia-spot days.

Tuesday, February 14, 2017

My Valentine

We used to do everything together. We were inseparable, my Valentine and me. For the years before kids, we would go to the grocery store together. Take walks together. Go to movies and out to dinner together. Visit coffee shops and book stores together. ‘Together’ was our favorite way to be.

In the years since expanding our beautiful, chaotic family, we barely see each other. With the demands of hectic work and family schedules, we struggle to carve time out to enjoy each other. Life happens. Life is busy and messy. But when given the opportunity, ‘together’ is still our favorite way to be, and my Valentine is my favorite person in the world. I think that is something to be celebrated.

Twenty-seven years ago, my family moved into the house next door to Alex’s. He is a couple years older than me, so our paths didn’t cross very often in high school. My bedroom faced Alex’s, and every so often I would hear his (very) loud music and think huh, that’s funny. I like that band too! I listen to that music too! Once when I got up the nerve to actually talk to him, he pretty quickly shut me down and we went back to The Ignoring Phase.
1994-ish
 After I graduated from high school, I spent the summer working at Blockbuster Video. Alex worked there also. Once in a while we would chat. I noticed Alex brought books to work that he was reading, and they were books I liked. I kept seeing how many similarities we had, and he kind of crept into my heart. He was funny and kind. He was interesting. I could see he was good. Just a good person. And he had cute curly hair and amazing blue eyes.


I finally got Alex to take me to a movie- “Four Weddings and a Funeral.” Since we lived next door to each other, I walked across the yard to let Alex drive us to our movie in his tiny blue car. He drove like a maniac (that hasn’t changed), and kept a quarter in his mouth for the toll (which was gross but oddly endearing), but somehow I fell in love with him anyway.

I was house sitting for family friends, so Alex and I stayed up all night after the movie, just talking. We just clicked. It was the most amazing feeling I’d ever felt. We talked and laughed. All night. I almost killed him because I didn’t know he was allergic to hazelnuts and made him try Nutella and he had an allergic reaction. Ah, young love. I went home the next day and told my Dad that talking to Alex was like talking to my best friend from childhood. He says now that he thought, “Uh oh. Here we go.”

We spent the next four years living in different states, going to school and trying to be together as much as possible. It was torture, being apart. Somehow our relationship survived, and we made some pretty cool memories along the way. And the rest is history…
2000
What’s so interesting is that I still like Alex. After having pretty torturous roommate experiences in college, I was convinced I was doomed to not like anyone that I would ever live with. Alex and I have spent the last 23 years being together as much as possible. And I still like him. Liking someone is different than loving them. You can love someone and truly hate being around him. So of course I love Alex, but it’s a gift to still like the person you love, after all that life has thrown at us over the past two decades.


While entrenched in the chaos of trying to help our twin micro-preemies survive, I read a statistic that said most marriages with multiples end in divorce, and if those multiples are preemies, you’d better just start packing your bags now. Because no marriage can survive that.

HA! Take THAT, stupid statistic! The only constant in my life, is my Valentine. Through absolutely every horror and struggle we’ve dealt with over the past 23 years, Alex is strength, love, steadfast perseverance. We have experienced things that most couples don’t ever even have to fathom. Four preemies, surgeries, illnesses, moves, job transitions, four kiddos with special needs…and through it all, he keeps stepping up. Every time I say I have a new thing we need to try for the kids because it may help them, no matter how quacky it sounds, Alex listens to me. He gives me a chance to explain to him why this new (sometimes crazy) idea could be one to improve our kiddos’ lives. He always supports me, even if he thinks I’ve gone bananas. He is reasonable and fair, and always wants to see his kids succeed, thrive, and grow.

There have been dark, low, horrible times, don’t get me wrong. Our life together is by no means perfect. There have been times (more times than two people should have to experience) when we have looked at each other over a NICU isolette with terror and raw panic in our eyes, afraid of losing our precious new baby. There has been unknown—where will we live, where will Alex work, can we make it on one salary, how will we take care of twins, how will we help our kids with their unique needs, how can we be advocates for FOUR kids, how will we maintain our relationship during all these years of sleep deprivation and total chaos…there are intense and powerful worries that we wake up to every single day. There are times when we are screaming and crying because we don’t know how we will survive the anger that spews from our children during their rages. There is disappointment and exhaustion when we put our kids’ special needs ahead of our own, again and again and again. There is stress about how to logistically get all the kids everything they need to be healthy and happy, when there are just two of us and so many needy little ones. There is the frustration and desperation when we see our children floundering at school with no effective help in sight. There is financial worry; we worry about how to take care of everything everyone needs on one salary. There are health scares. Trips to the ER. Illnesses. Late night fevers. Owies to kiss and bandaid. Cars and dishwashers that break, bills that have to be paid. An endless monotony of annoying life distractions.

Love isn't always magical and pretty. Sometimes love gets buried under the mountain of dirty, messy, gritty, sucky life stuff. But true love is always there, steady and sure, waiting to be dusted off to come back into the light. True love is helping your wife take a shower after her third C-section, because her organs started shutting down and she's in so much pain she can't breathe. True love is instinctively catching your son's vomit in your open hand while he hurls it out of his body at the speed of light. True love is sitting with your wife while she is wrenched with worry about the latest struggle a kid is having. True love is changing poopy diapers and being covered in spit up and not having slept more than 3 hours in two days. True love is taking your toddler twins on an outing so your wife can have a moment to rest. True love is letting your little girl paint your toenails fluorescent pink. True love is popping your teens' zits and squishing a Q-tip in 8 little ears because they love the sound of having their ears "cleaned." True love is searching for (and finding!) a job in the area because your kids are barely hanging on in the environment they know, and to move them would mean major setbacks. True love is making your wife a gourmet dinner after a hard day at work. True love shines through the mess of life, like a bud escaping the soil in spring. 

Despite the mess of our chaos, once in a while, we find each other again. We catch each other’s eye and, after all this time, can read each other’s thoughts. I know when Alex’s look says, “Can you believe this kid??” or “Help, I’m about to lose my mind!” or “Did you shower today?” Once in while we find time to be together, just us. And we are always amazed at how much we like being together. Even after all the chaos of the past twenty-three years. Even after all the worry that weighs us down every day. Even after the list of special needs and endless brainstorming about how to help our kids. Even after all the never-ending, soul-crushing, tear-producing stress of this life. Even after all that, Alex is my Valentine.
2015
You know what makes our marriage great? Respect. Love. Kindness. Hot chocolate doesn’t hurt, either. A couple weeks ago, I had had a very bad horrible terrible morning because of the stress of getting the kids out the door for school. I also was feeling like total crap physically. Alex had to leave early for a doctor’s appointment. I was sitting in my sewing room, working on a weighted blanket, when Alex came home to get ready for work. In his hand, he had a cup of Panera hot chocolate for me. He knows this is one of my favorite treats of all time. He thought about me, and went out of his way to do something sweet and unexpected for me. This is who I knew he was, twenty-three years ago. This is who he still is. This is why he is my Valentine.

The way Alex loves his kids is also why he is my Valentine. The way he can go from slogging through math homework with one kid who has a learning disability to looking for a Barbie shoe for another, to laughing over YouTube videos with one more, to taking yet another one to therapy…this man. He just keeps showing up, you know? I’m sorry to say it, but I hear about a lot of Daddies who just refuse to show up. They can’t or won’t be there for what their family needs. Not my Valentine. It’s hard, it’s stressful, it’s exhausting, much of the time life really stinks, but my Valentine keeps showing up for us, day in, day out. Even when he can’t take another millisecond of the chaos that is our life, he regroups, he rethinks, he figures out how to be here for all of us. Emotionally and physically. When I break, he is strong. When he falters, I’m here for him to lean on.

Recently one of the kids’ therapists said to me that most families would have been torn apart by the level of stress our family has. By the rage some of our kids display, by the turmoil and strain our family has to deal with on a daily basis. By the PTSD we surely all suffer from because of our bag of special needs. She said the fact that our family is still together, and so loving toward each other, is a huge testament to who we are.

Sometimes I don’t know how we’re still together—all the odds are stacked high against us. But then I remember who I am, and who Alex is, and then I know why “we” work. Because we respect each other, even in the toughest moments. Because we try to be kind. Because we forgive. Because we are committed to each other. Because we remember the little things that make the other person happy- like hot chocolate after a terrible morning. Because when all is said and done, when we are blessed enough to find a precious few moments of less stress, we like each other more than any other humans on Earth. And because we like each other, we strive to love each other more every day. My Valentine is my rock, my heart, my joy.

Here’s to my Valentine. I thought I loved you when I married you, but the last 23 years have given me endless chances to see how much more amazing you are than I thought all those years ago, and to see what true love looks like up close. If you can come through all that we have, and still genuinely like and love each other, that’s something that should be celebrated.

Happy Valentine’s Day, my Valentine.

xoxo